Who Here Can Say They Function Pretty Well?

[JenniferInOhio]

Those of you that do function pretty well most of the time, what lifestyle changes have you made?

For me...

** Before starting anything in the morning, I take my beta blocker and let my body get used to being upright (20 minutes is usually good).

** I sleep on a slanted pillow.

** I don't clean my house all in one day. If I'm doing stuff such as mopping and vacuuming, I take a few breaks if I'm doing more than 1 room.

** If the temperature is 80 degrees and above, I opt for shade and cool drinks. I don't do a lot of physical activity outside if the weather is warm.

** If I take a flight of stairs, I can't do another one immediately or my heart will be racing.

** I drink so much more fluid than I ever have in my life. I used to drink 3-4 glasses of something per day (not enough for even a healthy person).

That's all I can think of for now. I'm just interested to hear what other well-functioning POTSy people have done to alter their lifestyle in order to function better.

[Clairefmartin]

Thankfully I am back to functioning well, and am doing the following to hopefully continue this trend:

-Take my Florinef in the AM before getting out of bed, and then drink a big glass of water and V8. V8 throughout the day (due to high salt) seems to help me stay hydrated and not dizzy.

-When doing housework or gardening, take frequent breaks

-take naps/lay down when I get worn out

-Take beta blocker at night and more Florinef

-Drink lots before bed

I have actually been feeling so good lately its been a chore to not overdo it, I was so excited to feel good the first few days I wanted to run around the block and clean my house from top to bottom. I have been venturing out and increasing my daily activity slowly though, and it has worked so far. My new meds really seem to be working well, I think we finally found the right combo and dosage. Thank God !!

Good luck!

[JenniferInOhio]

Well, this is depressing

[morgan617]

Sitting up too long will wear me out for days. I do almost nothing. If I do, I will pay dearly for it, and any more it's just not worth it.

Today I did some house work, but I will be sick for at least 3 days, which is a bummer, because this is my hubs last week of vacation, so I will be crappy the rest of the time he's off.

It is a bummer............

[cmtaylor5]

I would say that I function very well. Before I was diagnosed, I was very tired, especially in the mornings. I could not get up and live my life until around 2 pm. Since dx and treatment, I have gradually gotten better and better. No one would know I have a chronic illness now unless I told them.

I am lucky to be a stay at home mom, but I think I could handle working now, even full time. I do all the cleaning of our house, with a few modifications (I will not stand and hang laundry, and I fold it sitting down, for example).

A few other modifications:

I take a bath instead of a shower on tachy days. I will dry my hair sitting in a chair (I very rarely have to do this anymore) on bad days, too.

I cannot wear high heels. Walking in them makes me have a high heart rate, (I think it's from being up on "tip toes" or something), so I only wear flat shoes. I will not walk on inclines for exercise, and I have accepted the fact that if I want to run, my heart rate is going to be pretty near 200, therefore I don't run anymore.

I also really restrict my activities in the heat. We live in Georgia, so I'll only garden in early morning or late evening. I've recently started cutting my lawn again, and I only do that when it's cool and I take very frequent breaks.

Tomorrow, I'm going with my son's class on a field trip at the local teaching hospital/medical school. It is a 5 hour field trip and we'll be walking or standing the whole time. I wouldn't have dreamt of volunteering to go on this trip last year. It's only the past month or two that I would feel confident that I can do it. However, I would not volunteer for a similar trip if it were outside.

I take my beta blocker religiously, I make sure I stay well hydrated and I always give myself permission to rest whenever I feel tired.

It's taken me most of this year to accept that I'm probably never going to be the same person I was before POTS, but I'm grateful for the vast improvement I've made in the past 9 months. I wish every person who visits this forum will eventually be able to feel "normal" again.

Carolyn

[Michelle Sawicki]

I'm doing pretty good. Here are a few things I do to stay that way:

-As mentioned previously, I feel better when I take my meds before getting out of bed

-I always sit in the shower

-Lay down for a few minutes after getting out of the shower

-I sit down while putting on makeup and drying my hair

-When I'm having a bad day (and it's winter) I won't turn on the heat in my car so that I vasoconstrict all the way to work. I hate being cold, but this really does help.

-Avoid stairs when possible. If not possible, I breathe evenly and deeply while going up the flight of stairs.

-Lots of water & pedialyte w/ extra licorice root on bad days

-At work, I pull up a chair and sit down with my patrons when they need help on computers, etc.

-Get plenty of sleep

-Take breaks, put my feet up, and get the blood back to my brain

-Wear compression hose, but not if it's too hot

-In the summer (in sandals), I can watch my toe nails to see how blue they are turning...they are kind of a red flag for when I need to sit down

-Try not to lift anything too heavy. I can't always avoid this at work and end up paying for it when I have to.

-Try not to do anything that requires a lot of bending over, such as taking the groceries out of the shopping cart.

-Take it easy on bad days and try not to push myself too much

-Lower my expectations of how clean I want my house etc. and what I can accomplish in a day

There are probably a million and one other things, but that's what I can think of off the top of my head.

[luckygoat3]

This has taken me a long time to figure out but i do better in routine.

I try and get up around 9 to 9:30 AM, usually i wake up an hour or so before get pills, bathroom and back to sleep.

If dad hasn't done the feedings yet i will go ahead and do them. Usually it takes me 45 minutes and i sit down a lot or lay down. Lifting heavy objects is always something i hate but must do. I lift 3 - five gallon buckets full of water, a bale a hay, and of course a 50 lb bag of feed. This usually wears me out but i do have muscles.

I usually shower after chores or around 10 - 10:30 AM, and after that i move in turtle mode. Online, tv, nap.

Then chores at 5 PM --- same as AM.

At night i am walking the goats more, walking up the lane, running them back (okay they run i walk and then they stand there and think what is taking you so long. ).

I find if i am active but NOT over doing it i do okay. I am still have symptoms, a headache that never has gone away, twitching, dizziness, and other symptoms i can't think of oh ya BRAIN FOG!

susie

[Gena]

JenniferinOhio - I do most everything you do to try and stay one step "ahead" of this illness, if that's possible!

I really focus on good nutrition (mostly organic, no processed foods, limited sugars, no caffiene, lots of veggies, etc).

I also believe it's so important to exercise, if even it's only a little bit. When I'm feeling good, I exercise about 3-4 times a week for 30-50 minutes. It's the one thing I find that really helps regulate my autonomic system and my HR. I don't ever push myself though, and take plenty of breaks and stay hydrated. There are some days that I might be too symptomatic, and on those days I do floor stretches and movements.

Luckily, I am able to work and I have an employer that doesn't mind if I arrive to work late in the mornings - as long as I get my job done, that's fine with them. However, the job stress can really cause my symptoms to flare up.

One thing I almost forgot - I try to meditate or do breathing exercises a few times a week as well.

Meds that I take only as needed are small doses of Klonopin and Inderal.

[ramakentesh]

most of the time i function pretty well - even to the point where I can run some weeks and jog. But when I crash i cant stand and have pre-syncape and brain fog all the time. The first time i was sick i didnt know what was wrong and was like this all day every day for a year. passing out occasionally, always dizzy and spaced out. No energy.

The things that helped me I found incidently. I started eating bacon for breakfast every morning and this seemed to make me feel better (salt) and then one day i ate a line of licorice and it was like 'awakening'.

Once i got diagnosed ive found that the best things for me are gatorade, licorice and moderate exercise.

On holidays and weekends I am usually but sitting all day at a desk at work can be a struggle even on my best days. But i usually only feel slightly dizzy.

The two things that seem to really bring on a nasty relapse are travelling/flying and stress. I just hit the licorice when this happens and after a while i improve.

POTS ***** but i just try to ignore it. Sometimes I wonder whether i just ignore it more than it really goes away. But when its bad im always reminded just how all encompassing it is - you could ingore that constant giddy out of it feeling and that racing heart.

[carinara]

I stick to many rules in order to get through the day ok.

I take my Beta Blocker half an hour before i get up in the mornings and eat half of a banana whilest still in bed. when i finally get up i sit in my chair (with rolls on) and roll myself to the couch were i lay down 20 more minutes before i wake up my daughter and get ready for work.

90 % of the time i use this chair so i dont have to stand. Its amazing how much relief this has given to me. I do almost everything sitting down.

I eat tiny little meals and never too much carbohydrates at ones because they make me ill.

I drink a lot in during the day but stop drinking in the evenings, because i cant get up in during the night to go to the toilet because this makes me sick.

I were my compression stockings all the time in during the day-

I cant handle the heat so i try to stay cool and avoid being in the sun.

When we go somewhere i make sure that i get out of the car just in front of wherever we are going, so i dont have to walk long distances.

I have a small fan with me that cools me down whenever i get overheated.

I never take baths anymore i sit in the shower and have a shower.

I try to get enough sleep.

I sleep with my head elevated up

When i feel ok in the evenings i try to go for a little walk and sometimes go on my "home"bike.

[Ernie]

Hi,

I do all the tricks and take my meds to avoid syncope. I barely can wash myself and do some cooking. I can't clean the house and work. I am disabled for life.

[jump]

I think by all accounts I would be considered very high-functioning. I personally feel like I've lost a lot of ability since getting sick, but in the grand scheme of things it's not too bad. I am able to stay "functional" by:

- Only working about 10 hours a week. A few weeks ago I worked 20 and paid dearly for it.

- Drinking about 5 liters of water a day.

- Taking a beta blocker and sticking to a vitamin regime.

- Accepting that about 1 or 2 days a week I will need to spend most of the day in bed (but this means the other days I can do most things)

- making sure to get at least 10 hours of sleep a night.

- avoiding all the usual triggers: standing, skipping meals, eating too big of a meal, getting too little sleep, not having enough water, waking up too early, etc etc etc.

- I struggle with daily pain and fatigue, but I try not to give in to it and I try not to let it affect my decisions.

Although there are times when I feel like these accommodations are a big change from my life before illness, bit by bit they are just becoming habit. I feel lucky that I am able to do as much as I can: work part time, exercise a few times a week, even go on the occasional not-too-strenuous hike, have a social life as well as a work life and a home-maintenance life. There are times when I have plans with a friend and I don't feel well enough to keep them, and that's always hard. But there are also times that I can keep those plans. I'm not on disability, so working part-time is very difficult financially, but at least I am able to keep my apartment and buy groceries. I know a big part of it is just luck that I am able to function as well as I do, but I also try to make sure that I really stay on top of my lifestyle changes, and that's made a big difference.

jump

[juliegee]

I am blessed to be able to say I'm functioning pretty well right now. Unlike many of you, my POTS is caused/affected by my mast cell activation disorder. I'm on a good drug regimen for that (ranitidine, zyrtec, singulair, atarax, and aspirin.) I take my meds religiously AM & PM to keep myself stable. I never leave the house without extra zyrtec and 2 epi-pens in case I shock from an odor, stress, or other as yet unknown trigger.

I avoid all of my known anaphylaxis triggers: strong chemical smells, most of the plants in my yard, pistachios, etc. With MCAD, I try hard not to get too. Too hot, too cold, too tired, too sad, too happy, too stressed, etc. Any strong emotion can set me off, affecting my autonomic nervous system.

I'm dealing with some pretty severe hypoglycemia righ now. I eat small meals often, high in protein and some complex carbs. No sugar, no fruit, no caffeine, no alcohol, no refined sugars, etc. Lots of fish, chicken, turkey, cheese, dark brown (whole wheat) bread and veggies galore. I had a long period of not being able to eat so....I never take this for granted.

I walk/run around 3 miles a day to keep my cardio system and bones conditioned. Sometimes I throw in a session of pilates instead. I struggle to get enough sleep, but if my hives flare, my chest/throat gets tight, the bottom of my feet start burning, the tachy goes crazy; I lock myself in the bedroom and go to sleep, letting my poor son, husband, and menagerie care for themselves.

My bones are less dense than they should be and I have trouble absorbing B-12 and folic acid because of the MCAD. I supplement for all of this.

I sit when I chop veggies and do lots of cooking. I also sit and rest after a shower, before I do make-up and dry my hair. I try to pace myself throughout the day while doing housework, office work, or running errands & chasing after my teen.

I drink water flavored with real lime or lemon juice all day and liberally salt my foods. I down a few doses of Miralax mixed in my water to deal with my frozen colon.

And, most importantly, I look forward to checking in with you (my support) every day . This is my time to sit and rest. And, I make sure to spend quality time with my family and friends.

Like all of us, I've been through so much medically and feel very blessed righ now.

Julie

[Heiferly]

How long did it take you guys to get relatively stable? I was averaging 2x/week syncope over the summer, and in the cooler months it's average of once/week. On top of that, seizures are still about monthly (tonic clonics). And occasional falls from sudden leg paralysis. Then I've got all the chronic symptoms in between the acute episodes. Is there still hope that I'll be able to get things under control in the forseeable future? Because right now it just seems (to me and my family) like it's just getting worse and worse.

[ramakentesh]

Ive never heard of mast cell - how is that diagnosed?

Well for my first year i was pretty bad - that being said I never fainted then at all. Only in later replases did i faint. My regime of licorice extract gets me out of those reasonably quickly.

[juliegee]

Rama, I learned about MCAD on the Dinet Website. It's listed as a cause of POTS. Go to The Mastocytosis Society website to see if it's a possibility for you: www.tmsforacure.org

Heiferly, your prognosis really depends upon the underlying cause of your POTS. If you're not sure, you're not alone. Many of us don't know definatively. MCAD interplays/aggravates/causes(?) my POTS, but we also have a connective tissue disorder in my family. It;s hard to say what causes what! Is yours post-viral, developmental, post trauma, etc? Many of us have improved and gotten more stable over time especially if you can get to the underlying causes and treat them. Sometimes, just time, rest and general TLC helps. Don't give up. Keep researching and asking questions.

Julie

[Heiferly]

I do not know the cause of mine. All I know is that, you know how they say some people with POTS have gradual onset and some can tell you the exact day it started? I had a sudden onset. I mean, I know the MINUTE I got sick and the entire progression of it that day. But I don't know what happened that day to make me sick. I'm hoping when I go to Dr. Grubb's clinic, he might be able to figure it out, because he's such an expert. But it will be a long wait for the appointment because they're so backed up and he's sick right now.

[nantynannie]

Hey All,

I am curious...what do each of us consider "well functioning"? Can anyone stand for more than a few minutes without moving or pumping your legs?

[jump]

I consider myself high-functioning and I know I can't stand for very long. Sometimes about three minutes, on a good day maybe five -- but I've found that I can be high-functioning without standing very much, and without standing still hardly at all. For me, walking is different - walking makes me tachycardic and short of breath, but I can *do* it, whereas standing still is pretty much an impossibility. There are very few things in my life that require me to stand still, and those few things (waiting in line, for example) I've learned to avoid (usually I shop with someone else and make them wait in line while I find a chair to sit in, that sort of thing).

I personally don't feel very well most of the time. Most of the day I feel like I'm going to faint and I feel sick and often I have a lot of chest pain. But I've learned that, for me, there is a big distance between feeling sick and actually collapsing, so I don't let feeling sick prevent me from working and doing most normal-life activities. Luckily I have a high tolerance for pain anyway, and I'm more or less used to feeling under the weather most of the time. I do have days that are worse, and those are hard, but the kind of base-line symptoms I have are such that I can still do almost anything, with fairly easy adjustments and accomodations.

[squishedlizard]

I've had these problems since I was a child. The doctors thought it was a heart problem and I'd grow out of it. Only a few years ago after they attempted heart surgery did they find out the truth.

I've been struggling and I don't know how to handle it. I'm not sure what to do.

I get between 10-12 hours of sleep a night. I make sure to eat well. Drink lots of fluids, and other than that, I don't have anything that works.

I have been on a variety of different medications and nothing's worked. None of the beta or calcium channel blockers. Etc. My doctor finally took me off everything because my symptoms were worse when I was on medication.

But now...I'm frustrated. I was dropped from my health insurance when I moved out of state. I have to work between 25-30 hrs a week to pay my bills. (California is very expensive compared to where I was living) When I'm not working, I'm usually lying down watching tv or sleeping since I don't have energy for anything else. I don't qualify for health insurance through the state since I haven't lived here long enough. I don't have enough money to pay for health insurance or to pay for medical care.

I had been coping with it as best I could for a long time, and lately, (probably due to my new birth control, Depo) I've been very depressed and having a hard time keeping my emotions under control. I've interviewed for a really good job and if I get it, I get full health benefits and they'll cover any and all procedures to any doctor that I want to go to effective the day I start my job. But I don't feel as though I can accept the position knowing that I have such hard days where I can barely function.

I am beyond frustrated and I don't know what to do. I'm reading through all your suggestions and I've tried most of them. It seems to go in cycles for me. Some things work well for 3 months and then they don't work anymore and I need to try new things....

I feel like I've run out of new things to try. I've been fighting with this condition for 22 years, and getting nowhere but more depressed.

[ramakentesh]

Hey i know how you feel but I guess one good thing about this condition is that no one can usually tell anything is wrong unless you actually faint. So even on bad days your boss may not be aware anything is wrong. None of my collegues knew anything was wrong until recently. Previpously i told them I suffered from migraines (which is true, although sens i got pots i dont get migraines anymore, i just get four day migraine auras...)